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Synapse eNews is published monthly by NBTS for all members of the brain tumor community. It includes updates on our Patient Services, Research, and Advocacy and Public Policy programs, as well as the latest research news, and information on NBTS regional events. July 2011
Get involved in advocacy

Come one, come all! – You’re invited to become a brain tumor advocate and make a difference by strengthening policies that impact our community. As the budget debate in Washington continues, get the latest updates on what NBTS volunteers are doing to fight for research and patients. Learn what parts of the health care reform law are now in effect. Find out more about the NBTS Advocacy Program and what’s happening by watching a short video message from David Arons, Director of Public Policy. We need you as an advocate! Give brain tumor patients and caregivers a strong collective voice.

Oligodendroglioma Research FundOligodendroglioma Research Fund

NBTS research grants play a catalytic role in stimulating science and are aimed at translating new discoveries into treatments that can save lives. The Oligodendroglioma Research Fund will support promising research specifically targeted at creating new treatments to fight oligodendroglioma (oligo). The oligo community is seeking to raise $300,000, the minimum amount for a two-year research grant, and then will leverage the scientific expertise and proven processes of NBTS. Whether it’s a family member, personal friend, coworker, or friend of the family, there are thousands whose lives have been touched by oligo. Learn more.

2011 NBTS Summit | Philadelphia, Pa.
Transforming tomorrow, today2011 Summit Photos
Don't miss the NBTS 2011 Summit in Philadelphia, November 3 - 6! Connect with others at one or all of these educational and inspirational events:
  • Celebrate the brain tumor community at our Annual Meeting.
  • Relax and meet new friends at our Patient and Family Reception.
  • Interact with local and national resources, get your questions answered, and leave with the tools you need to Navigate Brain Tumor Survivorship.
  • Get involved and take action through our Advocacy program and the exciting, new GET YOUR HEAD IN THE GAME® initiative.
  • Inspire hope by uniting to fight brain tumors at our NBTS Race for Hope - Philadelphia.

Space will be limited for some events so sign up at to be notified when the registration information and full agenda are posted in mid-August.

Wilmington Blue RocksGET YOUR HEAD IN THE GAME® Brain Tumor Awareness Night with the Wilmington Blue Rocks
Please join us on Friday, August 12 (new date!) at 7:05 PM for GET YOUR HEAD IN THE GAME® Brain Tumor Awareness Night at Frawley Stadium in Wilmington, Del., to watch your Wilmington Blue Rocks host the Lynchburg Hillcats. Tickets are $9 each and net proceeds will benefit NBTS. Email Kristin Davis to purchase your tickets. We look forward to seeing you at Frawley Stadium on August 12, and hope you will stay to watch the post-game fireworks show!
Story Corner: CoreyA Chapter from our Story Corner
Corey is a young adult ependymoma survivor and a member of the NBTS Patient Support Network. In December 2006, a week after her 22nd birthday, Corey was diagnosed with an ependymoma brain tumor in her left temporal lobe. This came as a shock as she had no symptoms prior to her diagnosis, and the brain tumor was discovered by MRI results after a car accident. Listen to Corey's story.
Brain Tumor Walk - New YorkOver 1,000 people attend the New York Brain Walk
Sunny skies greeted the nearly 1,300 supporters who joined together at the New York Brain Tumor Walk on June 18 on Governors Island to walk, celebrate, and raise awareness within the community. The event attracted participants and volunteers from all over the Tri-State area. Walk Chair Dr. Susan Pannullo expressed delight with the turnout and the nearly $300,000 raised by participants. Dr. Pannullo, who is a NBTS board member and neuro-oncologist at Weill Cornell Medical College (NY Presbyterian Hospital), also voiced her appreciation to event sponsors Weill Cornell, Mt. Sinai Hospital, and Long Island Brain Tumor Center.

Community events update
Upcoming Community Events
Joel H. Levitt Memorial Fishing Tournament and Barbecue
July 30, 2011
Margate City, N.J.
An avid fisherman and lover of gatherings, Joel has inspired his family to remember him through the activities that he enjoyed most. Please plan to participate in the 2011 Fishing Tournament Boat Cruise and Barbeque Awards Dinner and Raffle. Learn more.

Oakland A's Brain Tumor Awareness Day
August 13, 2011
Oakland, Calif.
Join us at the Oakland A's vs. Texas Rangers game for brain tumor awareness! Fifty percent of each ticket purchased goes back to NBTS. Learn more.

Matthew TrainhamCommunity Events Highlight
4th Annual Golf Tournament at Willowbrook Golf Club

In their 4th annual golf tournament in Watertown, N.Y., Matt Trainham and his wife, Barb, have done an incredible job fundraising, raising more than $10,000 for NBTS. Seventeen years after diagnosis, Matt is the longest known survivor of an oligodendroglioma brain tumor. On June 18, Matt was able to golf alongside his doctor, who has also played in all four tournaments. With 13 teams and 52 players, this year's event set a new record of holes purchased, selling 110 holes. The couple hopes to break that record once again in 2012.

Learn how to start your own community event!

NBTS Scientific Insights
NBTS's Scientific Insights is intended to provide the brain tumor research community with a forum in which to respond to some of today's most intriguing questions. We hope these questions will stimulate conversation and will disseminate information to all those interested. We will post a new question every month, and look forward to your insightful responses. This month's question asks for researchers' insights into research approaches that utilize developmental neurobiology. The Scientific Insights comment feature will launch soon, so keep your eye to the NBTS Facebook page for the formal announcement!
Official tartan of the brain tumor communityOfficial tartan of the brain tumor community
Created by Robert Henderson in honor of his friend, Kelley Oliphint, who lost a valiant fight with brain cancer in 2008. The inspiration for the design came to Henderson after climbing Crestone Peak in Colorado, a mountain that Oliphint himself had scaled and been changed by the experience. The tartan's grey and black blocks represent the strength and stability of the granite in the mountain as well as in our bodies; the black and white stripes symbolize the cracks and flaws that can appear in any mountain – as well as in human bodies; and the lavender stripe represents faith, hope, and healing. For more information, please visit
Use your American Express® card to donate to NBTS
With American Express' Members GiveSM program, you can donate to NBTS with your American Express card or redeem your Membership Rewards® points to make a donation. You can even set up recurring donations, or add a dedication to your donation. Visit the Members Give website to learn more.
NBTS Events update for top fundraisers
New this year! At this year's events, the top fundraisers will be determined by the amount raised as of midnight the Wednesday before the event. You will of course be able to raise funds after this date; they just won't be counted towards your team total when determining the top fundraiser announced at the event. The following event has an upcoming "top fundraiser" deadline:
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Register now for our upcoming events!

Portland, Ore. - August 20
Brain Tumor Walk

San Diego, Calif. - Sept. 10
Brain Tumor Walk

Southern California - Sept. 17
Brain Tumor Walk

Boston, Mass. - Oct. 1
Brain Tumor Walk

Silicon Valley, Calif. - Oct. 16
Brain Tumor Ride

Dallas-Ft. Worth, Texas -
Nov. 5

Brain Tumor Walk

Philadelphia, Pa. - Nov. 6
Race for Hope - Philadelphia

See a full listing of 2011 events

NBTS out and about
Some of the upcoming events in which NBTS is participating:

Translational Research Summit
July 28-30
Washington, D.C.

Meningioma (BRAIN) Conference
September 2011
Boston, Mass.

Events NBTS previously attended:

American Society of Clinical Oncology
June 2-7

Brain Tumor Epidemiology Consortium
June 4-7

Developmental Neurobiology RFA

Items of Interest

Project update from NBTS-funded researcher
Results from Dr. Charles Keller's NBTS-funded study were recently published in the prestigious Journal of Neuro-Oncology. The 2008 grant evaluated a novel mechanism to stop tumor growth for medulloblastoma. Dr. Keller's lab identified a promising class of non-chemotherapy drugs and will pursue a clinical trial. Read more

Have you been reading the "Headquarters" Blog?
Each week the Patient Services team chooses a topic and posts stories, interviews, perspectives, resources, and more on that particular topic. Here are a few highlights from the blog this past month:

Q & A: Cherry Estilo, DMD, Dental Oncologist
In this blog, the Patient Services team talks about the effects that brain tumor treatments, such as radiation and chemotherapy, may have on one's oral health. We interviewed Dr. Cherry Estilo, an expert in dental oncology - a discipline devoted to the dental and oral care of cancer patients. Read more

Sarah's Story: Embrace Each Moment
This story comes to us from Sarah, a member of the NBTS Caregiver Support Network. Sarah, age 30, was the primary caregiver for her brother who was diagnosed with a glioblastoma (GBM) in 2008. Read more

Q & A: How can I help my brother or sister?
Siblings of any age feel angst when a tumor is diagnosed. Sometimes there is a feeling of guilt that one’s brother or sister has the tumor instead of the other person. If hard feelings have developed between siblings in the past, then figuring out how to manage these feelings often arise. It comes down to how to help the sibling. Read more

Recent Articles

Slow growth of childhood brain tumors linked to genetic process seen in skin moles

Association between exercise and longer survival after brain cancer diagnosis

Elderly patients tolerated temozolomide for glioblastoma

Glioma stem cell proliferation and tumor growth are promoted by Nitric Oxide Synthase-2

More research news

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National Brain Tumor Society is a nonprofit organization inspiring hope and providing leadership within the brain tumor community. We exist to find a cure and improve the quality of life for those affected by brain tumors. We fund strategic research, deliver support services, and promote collaboration.
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